I have a memory from when the twins were about 2-years-old--I was past the intense worry of any relapse that would send us back to the NICU, and I'd finished reading everything I could find about Down syndrome. I began to poke my head up and look about and wonder, What are other families with kids with Down syndrome like? It was this curiosity that brought me to my first special needs play date at our local Child Development Center.

I remember rushing out the door, after spending too much time looking for an inexplicably missing shoe. I remember feeling nervous at the thought of meeting new people, especially other moms. Several times, I nearly turned the car around and headed home. Even in the parking lot, when I could see that a small circle of women had already gathered, I was overcome with doubt, thinking, Why did I agree to do this? and then telling myself, "It's for the kids; it's for Avery." But of course, it didn't turn out that way.

All these thoughts were familiar, and reminded me of my very first play group with my oldest son Carter. Both times, there was a wicker laundry basket in the middle of the room, filled with board books and stuffed animals and a Little People Yellow School Bus and bright Duplo blocks and a Lights and Sounds Shape Sorter. Nearby, there was an assortment of cookies and juice boxes. A mountain of shoes and jackets were piled in a corner, next to a stack of empty baby carriers and a line of parked strollers.

Other things were familiar: introductions, including the names of the children. The questions: "How many kids do you have? and "How old is your baby?" and "Where did you deliver?" Later, mostly told quietly, birth stories.

But these birth stories included a part about getting a diagnosis. Sometimes they were sad; other times they told of great relief in having an answer. The stories often referenced medical terms, and things like monitors and IV lines and extended hospital stays, even surgeries on tiny newborns.

The conversations covered practical matters, like PT, OT, ST. SSI, SSA, Early Intervention. Low tone versus high tone. Ear tubes, vitamin therapy. Dry skin, thyroid tests. And theoretical matters, too, like how prenatal diagnosis impacts the rights of the unborn, or how sibling relationships are affected by disability, or how various cultures view children and adults with visible differences.

The same, in both groups: mother guilt ("Am I doing enough?"); striving for balance ("Sometimes I feel overwhelmed."); and love ("I can't imagine my life without my child.") Both times, the hours passed too quickly, resulting in a mad dash to match shoes to feet, coats to kids until everyone was headed out the door, back to real life.

What I've come to realize is no less true for its obviousness: the play groups are as much for the moms as they are for the kids. It's a place where women can meet, if only briefly, with other moms who might share similar experiences--who might come to their mothering with common reference points.

Increasingly, I've been finding those shared experiences by connecting with other mothers online. Our words are what defines us; I'm drawn to the woman whose son might have a different diagnosis than mine, but her outlook on parenting feels like my own. Or a family halfway across the world, living in Australia--but they, too, have one older sibling and a set of twins, one with Down syndrome, one without. Sharing our stories--across the miles, across time--enables me to see our connectedness, our common bonds as families.

In the spirit of sharing, here are two sites that I love: Can I Sit With You? is an ongoing book and blog project that explores "The Stormy Social Seas of the Schoolyard." It's a collaborative effort fueled by donations of time and talent, and all proceeds are used to fund a local Special Needs PTA.

And identical twin sisters Janice and Susan, founders of 5 Minutes for Mom, recently launched 5 Minutes for Special Needs, edited by Tammy, who writes about her experiences mothering a medically fragile boy with Down syndrome at Praying for Parker. It's a group blog where parents of kids with special needs can find "support, insight, and inspiration."

What I've found, in all these instances--online and in person--is the value in telling our stories, to each other and because of each other. There we find strength, we find solace, we find commonalities. But mostly, we find ourselves.

Three-year-old Caitlin Powell was diagnosed with Sanfilippo Syndrome, a rare disease that will, according to her doctors, bring her life to a close before she's a teenager. Now, most parents, upon hearing such news, would continue with their lives while trying to make their child as comfortable and as happy as possible.

Not so Ben and Emma Powell. They weren't content with the idea of taking their daughter to the local park after work and on weekends; instead, they wanted to fill her remaining years with more joy and excitement than most people experience in a normal lifespan. So they started making sacrifices. The quit or cut back on their careers so as to have more time with Caitlin and then sold their house to have the funds to do so.

10 Places to Take Your Kids Before They Grow Up

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First up on their itinerary is Disney World in Florida and, while they're there, swimming with dolphins. Then they'll hit a couple of theme parks back home in England along with the Scottish Highlands. Next year, they'll hit the African continent for a safari. "She won't be with us for very long so myself and Ben have made a conscious decision to make every day special for her from now on," says Emma Powell. "Caitlin's happiness is our motivation."

One of my few regrets is that I didn't take out a second mortgage in order to take my dad on a trip to his native Germany before he died. It sounds like the Powells won't have the same regrets. Kudos to them for putting their daughter first.

Bluetooth headsets -- the little wireless telephone gadgets -- are all the rage these days, even more so now that some sort of hands free device is required by law in order to use a cellphone while driving in California. At first, advocates for the deaf thought the fad was a good thing because it would make kids with cochlear implants stand out less.

The implants consist of two parts -- an internal, surgically implanted receiver and an external unit with a microphone, computer, and transmitter. Unfortunately, there is a downside to the bluetooth craze -- the units get stolen right off of people's heads. While it must suck to have a $50 or $100 cellphone accessory stolen, having a $6,000 device that lets a kid hear stolen is downright terrible.

But that's what has happened to three-year-old Jose Franco -- twice. Jose was only two when he received his cochlear implant and the device has helped him learn to speak (he's even bilingual) and sing. One day, while shopping at a grocery store, someone snatched the external unit from his head and took off with it. His mother, Hilda Giron, left him with a cashier and chased the thieves. She didn't catch the boys, but she did find the earpiece in the parking lot, still intact.

Last week, however, two teenagers grabbed the headset while Jose and his mother were having lunch at McDonald's. This time, the crooks got away. Luckily, Jose has a backup unit, but his family will be responsible for replacing the lost device. It's bad enough to take away someone's bicycle or iPod or even their computer, but to take away a child's hearing is a special kind of horrible. Hopefully, the thieves will realize that what they stole is of no use to anyone but little Jose and return it.

Here's one thing you might not know about my son Avery: before each meal, he insists that we all say grace.

In our family, that means we join hands and say a little prayer, a simple rhyme for babies and small children that goes like this, "God is great, God is good, let us thank him for our food. Amen." When it comes to the end, Avery says "Amen" with such gleeful delight that he's nearly shouting; it sounds more like we're doing a team cheer than giving the food a blessing.

It doesn't matter to Avery where we are--we could be in a restaurant with servers in crisp white shirts and every time you take a sip of water, a busboy appears to refill it for you; or we could be seated beneath a picnic umbrella in the food court of the Costco, eating our hot dogs and soda (with 1 free refill) for a dollar fifty. Either way, Avery will not begin eating until we've joined hands and said grace.

Certainly, this burst of piety isn't something I expected when I learned Avery had Down syndrome. I don't know what I expected, really--my friend Kathy and I were recently talking about it. She's mom to a son with Down syndrome too, and we each had different, albeit wrong, ideas about what being the mom to a special needs child would mean to us. She felt, in part, that it would require her to assume some sort of mantle of "specialness." I thought (and I have no idea why I believed this) that I would need to begin driving a van. A white one.

None of these things have proven true, of course. Being Avery's mom doesn't make me feel any more, or less, special than being a mom to my other kids does. And Avery hasn't needed any extra adaptive equipment (other than the usual things, like when he was littler, a stroller, or now, a car seat) so there's no need for my white van.

What has proven true is that mothering Avery has brought people into my life that I might not have known, otherwise. Therapists, of course, and doctors and nurses. And other parents of children with Down syndrome, and parents of kids with CP and autism and Asperger's. Children who are learning Braille, or sign language. Children who simply don't fit the norm, for any number of reasons.

Sometimes people liken being the parent of a special needs child to having taken a detour in life--like finding yourself in Holland, for example, when you'd made reservations for a trip to Italy. I know this analogy works for some families, but not for others. I've come to understand that the one-size-fits-all approach is not a good model for human beings.

I like saying grace before every meal. I like that Avery reminds us to do it, that he requires us to slow down 3 times a day for a moment of gratitude. Because of him, we hold hands, and are thankful.

I feel that way about my fellow special needs parents. I don't know if you consider yourself in Holland or not, but wherever we are, whenever I poke my head up and look around, I realize I really like my fellow travelers. Parents who can talk PT or ST or OT, parents who know about g-tubes and canulas and oxygen tanks tucked in the corners of rooms. Moms and Dads who know infant CPR and how to insert a trach and what to do if a child turns blue.

We know all these things and we also play Peek-a-Boo and sing "Ring Around the Rosie" and count tiny toes with "This Little Piggy." We marvel at low-tone babies learning to sit up, or at the intricacies of a child decoding the pattern of raised dots in a line of Braille.

There are many things I didn't know about being Avery's mom, in the beginning. But I'm learning, from him, and from all of you. And I wish for us a safe journey to wherever we're headed--may we find our paths filled with lots of grace, and always, traveling mercies.

The man at the library, walking with 2 canes, drags his thin, weak legs behind him up to the water fountain, and one of my boys asks, "What's wrong with him?"

I lift my finger to my mouth in the universal sign for "shhhh." All 3 of my children look at me, confused. They don't understand why I don't want to talk about it--we usually talk about everything, a running dialog on the state of the day, like watching a DVD with the comments turned on, the director and the writers and the actors all adding in their 2 cents.

Just today, we'd discussed why grass is green (and a word that begins with P and sounds like "eff", photosynthesis!) and the new, Harry Potter-esque mural painted on the library wall ("Creepy!" said 5-year-old Bennett; "Cool!" said 9-year-old Carter), so my reluctance to talk about the man using canes stood out simply because of its difference.

Just like the man, himself. And the thing is, I don't know why I was reluctant to talk about it.

Here is a man with a story to tell. One he may, or may not feel like discussing at the water fountain with me and 3 little boys of varying ages and abilities. But how he talks about his life, and how he feels about it, is something I'll never know. I won't know because I didn't have the right words to use to ask.

I've written before about wishing there were a secret handshake for people who love children and adults with Down syndrome. A way of recognizing each other in a crowd--a way of saying hello, without actually having to speak. I'm thinking here of motorcyclists flashing their headlights as they pass each other; a little gesture that announces, I see you.

My son Avery's speech therapist, Molly, would be proud of me for these thoughts. Very early into our sessions, she began trying to explain the concept of Total Communication. What she taught me was that language is only one of the tools we use to communicate with each other. There's also how you say the words--the tone you use, its timbre and pitch. And there's what you choose not to say, which often speaks volumes.

You might be tempted, as I was, to think of the '80s concept of body language, and if you're recalling those cheesy come-on lines ("I can tell by the flip of your hair that you're into me...") you wouldn't be too far off. So Molly worked at teaching me to see the complexities in everyday speech and language; and I worked at breaking down those sequences into their smallest parts, to better teach Avery.

As it happens, even the smallest parts of communication are complicated. Take, for instance, a smile: is it happy, or sneaky? Is it smiling-through-the-tears, or shy? Malicious? Or simply joyful?

Which brings me back to the man at the water fountain in the library--sometimes communicating with each other can be a very tricky endeavor. Later, after the kids and I had left the library and everyone was buckled in the car, I tried to explain, and failed miserably.

I began with a story about a man with one blue finger, and I tried to show how his finger was normal to him; something he may, or may not want to talk about. He might want to have a little discussion about it, or he might want to go about his day, drinking a cool arc of water from the fountain.

And then I realized that my story, and my reaction to the man, was based on the assumption that he would feel bad about his legs, and not want to have attention drawn to them. I don't know this to be true. And I don't know if not talking about disability is any better than talking about it.

When people ask me about Avery, most of the time I'm happy to share what I know about Down syndrome. I'd rather people hear it from us, than make assumptions. I see it as a chance to encourage right-thinking, as opposed to wrong-thinking.

But what is right-thinking, in this case? I suspect the answer is as varied as the 50 million Americans living with disability. In this instance, I take my cues from Total Communication--the man kept his back to us, his eyes down. He didn't engage the boys or me in any way; he seemed busy and intent, a person not interested in casual conversation. And therein lies the key: seeing the person as well as the disability. It's what I wish for Avery--and what I wish for us all.

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Imagine you've just sat down in a restaurant and your five-year-old autistic daughter is making a fuss because her favorite food wasn't on the menu. You're trying to deal with the situation when a waiter comes over and informs you that another customer is refusing to pay for their meal until your child is removed from the restaurant. You are then asked to leave.

Now, I'm not fond of children screaming in restaurants and I'm not above taking my kids outside if they can't behave, but it sounds like this family had just arrived, were looking at the menu, and hadn't really had a chance to deal with the situation before being kicked out. Certainly, as the girl's father said, "The first question should have been, 'Is there any way we can help?' not 'Can you please make your child leave.'"

The good news is that the restaurant has apologized and plans to raise funds for autism research. Chris Manderscheib, president of Smitty's Canada, said "we want to make sure that we've addressed it, making sure we educate ourselves as well." Smitty's is a chain of family restaurants and, while a screaming child is never acceptable in any restaurant, I would think the management would be somewhat forgiving and give parents a chance to calm their child before giving them the boot. Perhaps, now, they will.

Though I spent a dozen years working in special education classrooms with preschoolers and toddlers, it never once crossed my mind that the dolls my students were playing with in the housekeeping area often looked nothing like the kids themselves. They were just kids playing with dolls, doing what kids do, even if those kids had diagnoses that other children didn't -- Down's syndrome, autism, cerebral palsy.

But some doll makers, many of them parents of special needs children themselves, think that children with disabilities might benefit from having a doll that looks like them. And so they created dolls like these. With the best of intentions, I believe, they made dolls with Down's syndrome, including a heart surgery scar, dolls who have been through chemo, bald and with a catheter port, dolls in wheelchairs, dolls with leg braces.

"You look like a flag," my husband Tom tells me and I smile, because I know what he means. We go through this every summer in the days leading up to the 4th of July. It's a bit ridiculous, I know: cheesy and sentimental and a little over-the-top. But I can't help it.

I dress myself in red, white and blue.

It's my summer compulsion--just as surely as the days become progressively warmer, the color red pushes its way toward the front of my closet. Combine it with the already-busy whites plus the blue of my trusty jeans, and you've got the makings of an American flag.

Tiny white stars on a red background begin to appeal to me this time of year; alternating stripes of blue on a white background (or is it white on a blue background?) look lovely. And for this brief time at the beginning of July, I see red, white and blue everywhere: red flip-flops, red bandannas, ripe, red strawberries in the grocery store. Blue skies, blue jeans, plump blueberries the size of marbles. White puffy clouds, white petunias, white whipped cream. You know where this is heading, right? A resplendent vanilla flag-cake in the fridge, which is a whole new level of flaginess--not only am I wearing it, but I'm eating it, too.

Actress and Blue Lagoon star Brooke Shields knows a thing or two about the paparazzi. Having been a child star and a young person in the constant eye of the media storm , Brooke has taken it upon herself to teach her children how to handle the media.

Brooke's daughter, Rowan, who is five, knows what to do when the paparazzi strikes. Says Rowan, when asked by her mom what to do when the media strikes, "Well, I look straight ahead and I don't look them in the eye." Shields is sorry her daughter even knows what the word 'paparazzi' means.

Shields says that teaching her children to ignore the press is a healthier way of handling them. The actress knows the paparazzi will be there no matter what she does, so better to ignore them than give them what they want, I guess. Shields is also mom to daughter Grier Hammond, two.

It's not uncommon to be on a plane with a crying child. However, having the plane actually TURN AROUND and return to the terminal because of a kid's tantrum isn't typical, but that is what happened to a North Carolina mother and her two-and-a-half- year old son with autism.

According to his mother, little Jared Farrell started getting anxious as the plane was taxiing down the runway, and the flight attendant didn't help matters.

"She kept coming over and tugging his seat belt to make it tighter, 'This has to stay tight'. And then he was wiggling around and trying to get out of his seat belt. And she kept coming over and reprimanding him and yelling at him," Janice Farrell, the boy's mother said.

Eventually, one of the pilots left the cockpit to see what the ruckus was about, and tensions between the adults rose, which caused Jared's behavior to get even worse and he started rolling around on the floor. As soon as the pilot returned to his seat, the plane turned back to the terminal.

"The pilot made an announcement that there was a woman and her child on the plane and the child is uncontrollable. And at that point I just broke down," Farrell said.

While it is true that "rules are rules" and Jared was not following the seat belt rule if he was having a fit on the floor, a disorder affecting 1 out of 150 kids just might warrant some training on how best to handle those with autism and making flying the friendly skies...........well, just a little friendlier.

I usually work in the mornings when the house is quiet, before the rush and hum of our lives takes over the day, like so many parents everywhere--trying to carve out a few extra moments; trying to keep my hand on the slim thread of my life before there were kids, and peanut butter toast and jam-faces to wipe and milk to pour and now, a puppy to feed and walk, too.

But lately, in these quiet, early mornings, I've had company. My middle son Avery wakes to my softest footfalls, and climbs out of bed just one step behind me. I can hear the door to the boys' room open (Avery is careful not to wake anyone else) and the thump of his tiny bottom as he slides down the stairs. Soon enough he's in my lap, head tucked beneath my chin. He doesn't ask for anything; he doesn't try to stop me. He simply sits in the cup of my lap and falls back asleep, while my fingers plink away at the keyboard on the desk.

This is not what I expected, when I learned I'd be a mom to a child with special needs. It's nothing I could have predicted, based on the books I read or the information we got from the hospital. Back when I was a new mom to Avery, I was hungry for stories about moms of kids like mine. I wanted to be able to imagine our future, but all I could come up with was sadness and adult diapers. I needed help.

One mom writing about her life with her son with Down syndrome is Emily Perl Kingsley. In her widely-read essay, "Welcome to Holland," she uses a travel metaphor to explain her new, unexpected life: she'd been planning to go to Italy like everyone else, but the itinerary changed. Her destination was a different place--not better, not worse, just different. Hers would be a trip to Holland.

"Welcome to Holland" came to me via one of the nurses in the NICU. It was a battered, graying photocopy. Someone had taken the time to add a picture of tulips across the top, and at the end there was a little string of stylized Dutch windmills, more than a dozen marching across the bottom of the page.

At the time, I wasn't sure what to make of such a thing. That the woman writing the essay (Emily) had a perspective to share was clear; whether I would come to agree with it, was not. That the person who created the photocopy wanted to help women like me, mothers trying to find their way, was also clear; how these worn, aged pages would aid me, was not.

This is what happened: I began seeing references to Holland everywhere. All the nurses in the NICU wore a particular brand of shoes--they were clogs. There was, improbably, a reconstructed Dutch windmill just off the highway I traveled each day to and from the hospital. And the farmland windmills dotting the wide, open grasslands (which had always looked to me like symbols of the American prairie) made me think of the windmills of Holland. They, in turn, made me think of a simple children's toy--pinwheels. How could I not have seen all this before?

And the same became true of Down syndrome. I began seeing it everywhere--a lady waiting to cross the street on the corner; a young man pushing a grocery cart with his mother; a baby with a tall shock of brown hair; on television, in the news, in the New York Times.

I've been Avery's mama for 5 years already, and it's not just Holland I see. These days, I'm more likely to notice the man walking with the limp; or the young woman with rigidity in her muscles; or the child overwhelmed by sounds. The causes for such things, or the names for them, are not important to me--what I see is the man, the woman, the child. I see what's different, but I also see what we share.

Even still, I'm sometimes caught off-guard. We live in a 70-year-old log home; its walls are covered with layers of dusty wallpaper that peels from the ceiling in long strips. Each weekend, we tackle another room--scraping, sanding, priming, painting. In the kitchen, beneath the fake-brick wallpaper and the magenta paisley paper, we uncover a pastoral scene: horses, riders, trees, a lake. And at the water's edge? A Dutch windmill, of course, just like the ones on my photocopy.

I hope I would have discovered this way of being in the world on my own, but in truth, I think it's something I owe to becoming Avery's mama. And the thing is, I'm grateful for it. I like my eyes that see. Call it whatever you please--Italy, Holland. I like it here, and I don't want to go back.

Just when you think you've heard it all, along comes this story out of Barrie, Ontario in Canada. 38-year-old Colleen Leduc is a single mom working hard to support herself and her 11-year-old autistic daughter, Victoria. Victoria attends Terry Fox Elementary, where she is enrolled in a special education class with five other autistic children. On May 30, one of the educational assistants who works with Victoria made a shocking allegation: the little girl was being sexually abused.

Under normal circumstances, the school's decision to call the Children's Aid Society and report this would have been appropriate. However, in this case, the EA's allegations were based solely on the word of a psychic who had never even met the child.

Leduc was shocked when she heard the allegations. "The teacher looked at me and said: 'We have to tell you something. We have to tell you that Victoria's EA went to see a psychic and the psychic asked her if she works with a little girl with the initial V. When the EA said yes, the psychic said, 'Well, you need to know that this girl is being sexually abused by a man between the ages of 23 and 26.'"

To back up the allegations, school officials pointed to Victoria's recent inappropriate sexual behavior in the classroom. Never mind the fact that this type of behavior is common in severely autistic children entering puberty and that other kids in the class were acting similarly. Leduc was told that under the Child and Family Services Act, the school is required to report suspected abuse if there are reasonable grounds. "The principal looks at me and says, 'We've called CAS.' Then I got sick to my stomach," says Leduc.

Fortunately, CAS officials have more sense and immediately dismissed the case. However, Leduc isn't completely satisfied with the resolution and is considering legal action. She assumes this is the end of it, but says she can't be sure. "Unless they take out a Ouija board and decide to do something else. They might want to take out a Ouija board or hold a seance, I'm not sure," says Leduc.

My 5-year-old son Avery is a master of the bait-and-switch.

This is what I mean: if we're working on his words, and I say, "Cracker," he'll say, "Dadah," and I'll say, "Try again, cr...cr...cr...cracker" in my loud, clear, speech-therapy voice, and he'll say, "Yummy!" or he'll sign eat (and laugh) or even, he'll reach in and kiss me.

When we're reading, I'll ask him to think about the letters we see, about the phonics and the text, and he'll point to the pictures instead, and smile his sweet little smile, and tell me (in all earnestness) about the tiny gold bug sitting in the corner of the picture, or about the little lost mitten, and how mittens are for when its cold. "Brrr..." he'll say, and pretend to shiver. "Cold!"

And eating. He's the best of my 3 boys at pushing food around his plate. He'll sign all done, and when I ask him if he's eaten one bite of everything, he'll crinkle his elfin eyes and say, "Yes!" But when I look at his plate, I can see that his 7 beans are still 7 intact beans; only now, several of them are hiding beneath an uneaten piece of bread.

If all else fails, his go-to move is pitching a little fit. He'll throw himself to the ground, fold in half like a pocket knife (he's very flexible), and with his head in his lap, he'll cry great crocodile tears, "Wah wah wah," only every now and then he'll peek to see if anyone is watching.

Avery is my middle son. He has dark blue eyes. His hair is the color of sunlight. His bangs hang down across his forehead and his hair curls a bit at the back of his neck. His skin is so soft. More than my other children, Avery has held on to his babyhood.

He has tiny feet and small hands. Chubby fingers, still, and his soft hair reminds me of a baby. He's the only one who can still fit in my lap. He climbs up and tucks his head into my neck, resting between my chest and my chin, a perfect fit.

He's really pulling out all the stops.

The 2 little boys, Avery and Bennett, sit at the kitchen table and Tom is there and big brother Carter, too, and we are the perfect birthday scene: me carrying the homemade layer cake on a big white plate across the kitchen, everyone singing the "Happy Birthday" song. It's like a picture from a dream I had a long time ago, only it's real.

Of course, the day involved the usual mishaps. I'd briefly wondered if I should make 2 cakes, one for each boy, but quickly dismissed the idea when I realized I only had enough flour for one cake, whole wheat at that. And then there was the birthday candles gone missing, which we solved by lighting long, thin tapers in two silver candlesticks. And the fact that everyone had sniffles and what appeared to be the beginnings of a summer cold.

All of these things, blessedly ordinary.

When it was time to blow out the candles, each boy staring intently at his flame, concentrating on making the perfect wish, I wanted to make one, too, a wish and a prayer--a thank you, sent up to the heavens on the curling smoke of the twins' birthday candles.

Five years ago, it was a sunny June Sunday, an azure-blue day, a lemon-yellow day, only the babies were too small and I was whisked away in the back of an ambulance to a far-off hospital that would become the babies' first home. Days stacked up, dozens of them, and only on occasion, when I was feeling especially brave and hopeful, would I allow myself a dream like the one at my kitchen table. A day of songs and cakes and misplaced birthday candles--ordinary sniffles, the common cold and nothing else. A regular life.

Five days after the ambulance ride and the early delivery, our pediatrician touched her hand to my sleeve and said, in the nicest possible way, "Avery has Down syndrome." I didn't know what those words meant, then, and I repeated them to her, and myself, and anyone who would listen--a question and its own answer: "Avery has Down syndrome? Avery has Down syndrome."

Shortly after, it was Father's Day. Another June Sunday, this one meant to celebrate fatherhood and children and family, only that year, it felt like a cruel joke. The dream of the birthday cake and twin candles was one we only sometimes believed--there was, then, the possibility of an equally real scenario that involved another kind of day, one of grief and loss.

Five years ago and five days. Life and death, love and loss, twinned together. And fathers to celebrate. Tom's parents were helping out and we all--Tom and I, his folks, and our 4-year-old son Carter--made the trip to the NICU to see the babies that Father's Day. After, we ate at a steakhouse where they served us a giant fried onion, open like a flower, blooming in the middle of us.

What I remember most about that time is kindness washing over me like rain; kindness tucking in around me like a blanket. Strangers stopped me to tell me of another family they knew with a baby in the NICU, or with a child with Down syndrome. Books carefully placed in the black nylon pocket of the breast pump, or on top of my pile of paperwork. Words, too, like "I'm proud of you" and "I love you."

And the kindest of all was Tom with his gentle steadiness, his constant presence. Packing up the plastic baggies of milk for the babies; cooking grilled cheese sandwiches for Carter, pickle on the side, slicing the pickle into long spears, so no one would choke. Washing dishes, picking up the house, stuffing dirty clothes into the machine and dumping the powdered soap on top. All this without being asked, or asking anything in return.

We went out to eat that Father's Day five years ago because it seemed like the right thing to do. Tom said he didn't want to remember it as the day we didn't celebrate--the one year in a long string of years remarkable for what didn't happen. So we went--part bravado, part stubbornness, part desperation, part hope--which is the worst combination for digesting a rich meal. I don't think anyone ate very much.

And now we are 5. Many of the details of those early beginnings have already grown dim; what remains is vivid and bright. I see the love of a father for his grown son. I see the love of another father for his small children--a fragile situation, a precarious time, but his love is real and strong and steady. And I see that onion, unlikely flower, blooming anyway--a sign of things to come.

My son Bennett, who is 4-years-old-going on 5, has a habit of saying, "It's a miracle!" Sometimes he says it of things that, to me, don't seem particularly miraculous, like when we find the missing rain boot, or when the VCR finishes rewinding, or when the waffle pops out of the toaster.

But other times, I'm bound to agree: watching the first green buds on the lilac bush grow into leaves and flowers; lying in the grass noticing the clouds move across the sky; stumbling upon three small blue eggs in the perfect circle of a nest hidden in the tall grass.

Bennett's twin brother, Avery, copies him and echos, "Mir-mur." Avery is two minutes older than Bennett, but you'd never guess it by looking at them, because Avery has Down syndrome.

I've been Avery's mama for nearly 5 years now, and mostly, it feels normal and ordinary to me. So when we recently met a new family, and the woman emailed me and invited us to lunch, I didn't think much of it. I wrote back and asked, "What time, and what can I bring?" She replied, and at the end of an otherwise ordinary exchange, she asked, in the nicest possible way, how she should prepare her children for Avery. What should she do? What should she say?

And there it was--a tiny stab to my heart. Why would she ask such a thing? I wondered. She'd already met Avery; couldn't she see he was just a child--no more, no less?

Being Avery's mom is a little bit like being the mom of a low-level rock star, or a minor sitcom celebrity. People have often heard something about Down syndrome, but it's not always helpful, or true--one mother I know was asked if her child spit and was a biter; I was told Avery probably only ate candy. People sometimes think our kids are always happy, or that they're angels. (One mother I know was told her child was the Bodhisattva.)

The new woman's email didn't say any of these things, of course. But I began wondering what she knew, and didn't know about Down syndrome; what she might be expecting of Avery, or me. The more I thought, the more anxious I got.

I remember feeling a similar mama-apprehension years ago, when I my oldest son Carter was a baby. I packed him into his infant carrier and pulled on my fourth-trimester jeans and my best shirt. I brushed my hair and swished mouthwash and put on lip gloss and mascara. It felt as if I were getting ready for a first date.

I can laugh about it now--those first playgroup women have been friends for years, and we joke about how we used to park all the babies in the middle of the living room like circling a wagon train, and how they would all stay there, and sometimes even sleep, which is so much easier than chasing them through a playground, or coaxing them off the highest level in the play-land, or running as fast as you can after a tiny person who has just figured out how to pump the pedals on a bike.

I write the new woman back and thank her for her questions. I tell her that the best answer is to treat Avery like any other child. I explain that he has no dietary issues or physical restrictions, and that there's nothing especially different about him, other than he's smaller than children his age (most kids just assume he's younger) and he's still learning his words, again, like a littler kid.

I tell her that Avery knows sign language (ASL), all my boys do, and that sometimes Avery signs and kids don't know what he's saying, but he's patient, and he'll keep trying until someone asks, What's Avery saying?, which is like a little game we all play (even me!) until we eventually get it figured out.

I add that in my experience, the littler children know there is something different about Avery, but they don't give it much thought. They see he likes to play, and laugh, and do kid-things, and that's good enough for them. Sometimes older kids have questions like, "What's wrong with him?" and I say, "Nothing, he just goes at a slower speed than most other kids," or "Is it contagious?" which it's not. Often, one or two children will form a close attachment to Avery and will speak for him and help him and care for him, which is always very sweet, but not necessary, though Avery loves it.

I finish the email and hit send. I hope I've been clear, but not pushy; friendly, open-hearted. Which is what I hope this other woman is trying to be, too. It's all very confusing, just like it was in the early days, when we circled the wagons--each of us trying to find common ground, for ourselves, and for the sake of our kids.

A few hours later, a reply arrives. She says they can't wait to meet Avery. Their family has been studying ASL and they're excited to have the chance to use it. I feel like Bennett: It's a miracle! The day is full of them, big and small.